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					 Legislative
   Goals
                                for the

Second Session
    of the

 110         th
                       Congress
                                –––––––––––


DISABILITY POLICY COLLABORATION
 The Arc of the United States                 United Cerebral Palsy



                                                      In Partnership With
                                                                AAIDD
                                                               ANCOR
                                                                 AUCD
TABLE OF CONTENTS
WHAT IS THE ARC? ....................................................................................................................... 4
WHAT IS UNITED CEREBRAL PALSY? ........................................................................................... 4
WHAT IS AAIDD? .......................................................................................................................... 4
WHAT IS ANCOR? ......................................................................................................................... 4
WHAT IS AUCD? ........................................................................................................................... 4
WHAT IS A DEVELOPMENTAL DISABILITY? ................................................................................. 5
USE OF TERMS .............................................................................................................................. 5
DEVELOPMENT OF NATIONAL POLICY GOALS ............................................................................. 5
THE ARC AND UNITED CEREBRAL PALSY IN COLLABORATION ............................................................................... 5
OTHER PARTNERSHIPS .............................................................................................................................. 5
SHAPING PUBLIC POLICY ............................................................................................................................ 5
DEVELOPMENT OF LEGISLATIVE GOALS .......................................................................................................... 6
MONITORING LAWS AND POLICIES................................................................................................................ 6
I. FEDERAL FISCAL POLICY GOALS ............................................................................................ 6
INTRODUCTION ....................................................................................................................................... 6
BUDGET, ENTITLEMENTS, AND APPROPRIATIONS .............................................................................................. 7
REVENUE POLICY ..................................................................................................................................... 7
II. PROGRAMMATIC GOALS ......................................................................................................... 8
INTRODUCTION ....................................................................................................................................... 8
A. CRITICAL GOALS ..................................................................................................................... 8
MEDICAID .............................................................................................................................................. 8
DIRECT SUPPORT WORKERS ..................................................................................................................... 10
HOUSING ............................................................................................................................................. 11
FAMILY SUPPORT ................................................................................................................................... 12
EDUCATION .......................................................................................................................................... 12
SOCIAL SECURITY/INCOME MAINTENANCE .................................................................................................... 13
B. PRIORITY GOALS .................................................................................................................. 15
AMERICANS WITH DISABILITIES ACT RESTORATION ........................................................................................ 15
CIVIL RIGHTS ......................................... ERROR! BOOKMARK NOT DEFINED.ERROR! BOOKMARK NOT DEFINED.
DEVELOPMENTAL DISABILITIES ACT ............................................................................................................ 16
EMERGENCY PREPAREDNESS AND RESPONSE.................................................................................................. 17
EMPLOYMENT, TRAINING, AND WAGES ........................................................................................................ 17
HEALTH CARE ....................................................................................................................................... 18
LONG TERM COMMUNITY SERVICES AND SUPPORTS FOR INDIVIDUALS ................................................................. 19
QUALITY OF SERVICES ............................................................................................................................. 20
TAX POLICY .......................................................................................................................................... 20
TECHNOLOGY ........................................................................................................................................ 21
TRANSPORTATION .................................................................................................................................. 21
C. ADDITIONAL IMPORTANT GOALS .......................................................................................... 21
CRIMINAL JUSTICE ................................................................................................................................. 21
DATA COLLECTION ................................................................................................................................. 22
FOSTER CARE AND ADOPTION ................................................................................................................... 22
HABILITATION ....................................................................................................................................... 23
IMMIGRATION AND NATURALIZATION .......................................................................................................... 23
LIABILITY INSURANCE PROTECTIONS ........................................................................................................... 23
NON-PROFIT ORGANIZATIONS ................................................................................................................... 23
PREVENTION ......................................................................................................................................... 24

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RESEARCH ............................................................................................................................................ 24
SOCIAL SERVICES................................................................................................................................... 25
TEMPORARY ASSISTANCE FOR NEEDY FAMILIES (TANF) .................................................................................. 25




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What is The Arc?
The Arc is a membership organization made up of people with intellectual (such as mental retardation, a
term seldom used anymore), developmental and other disabilities, their families, friends, interested citizens,
and professionals in the disability field. Together they form state and local chapters of The Arc, making up
the largest volunteer-based organization in the United States devoted solely to working on behalf of this
constituency.
The Arc also advocates for people with other disability labels who, at times, will need similar supports and
services in order to be as productive and independent as possible.
For more than 55 years, approximately 900 state and local chapters of The Arc have worked throughout the
nation to ensure that their constituents have the supports and services they need, are accepted in their
communities, have a voice in policies that affect them, and have control of their own lives.
What is United Cerebral Palsy?
United Cerebral Palsy (UCP) is one of the nation’s leading organizations serving and advocating for the more
than 54 million Americans with disabilities. Its mission is to advance the independence, productivity, and full
citizenship of people with disabilities through an affiliate network. Over half of UCP consumers are people
with disabilities other than cerebral palsy. Through its nationwide affiliate network, UCP offers to individuals,
families and communities such services as job training and placement, physical therapy, individual and family
support, early intervention, social and recreation programs, community living, state and local referrals, and
advocacy. United Cerebral Palsy affiliates directly serve more than 170,000 children and adults with
disabilities and their families every day.
What is AAIDD?
The American Association on Intellectual and Developmental Disabilities (AAIDD, formerly AAMR) is the
world’s oldest and largest interdisciplinary organization of professionals concerned about intellectual and
developmental disabilities. Today AAIDD has more than 40,000 members and service recipients, and this
year the organization is celebrating more than 132 years of vision and professional leadership. AAIDD’s
commitment to innovation and progress is as strong today as it was in the Association’s earliest days.
AAIDD is the source of credible disability information based on research findings. The Association also
provides a unique forum where professionals, parents, advocates, and policy makers can come together to
discuss disability research, policy, and service issues.
The AAIDD network strives to provide the best information, resources, supports, and services designed to
enhance the quality of life and ensure full societal inclusion of persons with intellectual and developmental
disabilities.
What is ANCOR?
The American Network of Community Options and Resources (ANCOR) is a national, nonprofit membership
organization representing private providers of supports and services to people with disabilities. For more
than 35 years, ANCOR has distinguished itself in the field by its balance of leading practices, resources, and
advocacy for member agencies and the people and families they serve and support. ANCOR’s mission is to
inform, educate, and network service providers to safeguard, develop, grow, and extend their capacity to
support the choices of people with disabilities. Together, ANCOR’s nationwide network of 825 providers;
395,000 direct support professionals; and 45 state provider associations daily support more than 385,000
individuals with developmental and other disabilities, promoting an optimal quality of life to advance full
participation.
What is AUCD?
The Association of University Centers on Disabilities (AUCD) is a non-profit organization that represents the
national network of university centers on disabilities, which includes University Centers for Excellence in
Developmental Disabilities Education, Research, and Service (UCEDD), Leadership Education in
Neurodevelopmental and Related Disabilities (LEND) Programs and Developmental Disabilities Research
Centers (DDRC).



                                               Page 4
The mission of AUCD is to advance policy and practice for and with people living with developmental and
other disabilities, their families, and communities by supporting its members to engage in research,
education, and service that support independence productivity and satisfying quality of life. AUCD members
represent every state and most territories in the USA and over 80 universities and medical schools. Through
its members, AUCD serves as a resource for local, state, national and international agencies, organizations,
and policy-makers concerned about people living with developmental and other disabilities and their families.
What is a Developmental Disability?
Developmental Disabilities are physical or mental impairments that begin before age 22, and alter or
substantially inhibit a person's capacity to do at least three of the following:

       Take care of themselves (dress, bathe, eat, and other daily tasks)
       Speak and be understood clearly
       Learn
       Walk/ Move around
       Make decisions
       Live on their own
       Earn and manage an income

Some common types of developmental disabilities are cerebral palsy, intellectual disabilities (formerly
referred to as mental retardation), autism spectrum disorders, and epilepsy.
Use of Terms
The Arc, UCP, AAIDD, ANCOR, and AUCD support and advocate with and for individuals with intellectual,
developmental and other disabilities and their families. In this document, we often refer to these groups as
―constituents‖ or ―our constituency‖ if a legislative goal applies to everyone represented by our collective
organizations.


DEVELOPMENT OF NATIONAL POLICY GOALS
The Arc and United Cerebral Palsy in Collaboration
The Arc and UCP have combined their resources, talents, and strong legacy of grassroots involvement in
national public policy into a formal Disability Policy Collaboration. Working together, we strive to be more
effective in convincing policymakers of the vast unmet needs of our constituents and in mobilizing our
constituents, their families, and our chapters and affiliates as active players in national public policy.
Other Partnerships
The Arc, UCP, AAIDD, ANCOR, and AUCD each have a rich history of building and participating in coalitions
and collaborating with each other and with other organizations in pursuit of national public policy goals. All
five organizations are leading members of the Consortium for Citizens with Disabilities (CCD). CCD is a
Washington, D.C.-based coalition of more than 100 national organizations representing consumers, family
members, providers, professionals, and other advocates. Because our constituents share the same needs
and interests as other Americans, The Arc, United Cerebral Palsy, AAIDD, ANCOR, and AUCD also participate
in non-disability coalitions. These coalitions help further our policy goals.
Shaping Public Policy
The Arc, United Cerebral Palsy, AAIDD, ANCOR, and AUCD base their public policy views on the
understanding that our constituents are full citizens and full participants in a democratic society. We work to
shape a state/federal partnership that provides benefits, supports, and services for our shared constituency.
These individuals and their families have an interest in learning about and having an influence on the laws
that affect them. All people with disabilities have the right to advocate for themselves at all levels of
government. The vast majority of our constituents have the right to vote.
While all 5 organizations support these policy goals, each organization may choose to emphasize goals
specifically related to the nature of the individual organization and its respective constituents.




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Our system of government was set up to give states substantial responsibility for the health, education, and
well-being of our constituents. Since state and local governments often cannot or will not adequately meet
the needs of our constituents, an increased federal role in ensuring and providing supports is necessary.
There remains an ongoing effort to shift some federal responsibilities to state and local governments. In
many instances, this shift has weakened or eliminated the very services and supports children and adults
with disabilities and their families need to survive. Despite the fact that the United States is the one of the
wealthiest countries in the world, there are unmet needs for too many of our constituents and their families.
Our organizations understand that strengthening national defense and homeland security is vital. Funding to
achieve a safer nation, however, should not come at the expense of any one segment of society, especially
those who are the most vulnerable, many of whom are almost totally dependent on both the federal
government and state programs with federal roots for their very survival.
Nationwide, hundreds of thousands of people with developmental disabilities wait, often for many years, for
funding for services and supports that will enable them to live, thrive, and contribute to their communities.
This is unfair to people with disabilities and to American families. Countless others have either not sought
services, are in states that do not provide services or maintain waiting lists, or have given up seeking
assistance. The Arc, United Cerebral Palsy, AAIDD, ANCOR, and AUCD will continue to advocate for needed
changes and additions to public policy that will address their needs.
Development of Legislative Goals
The foundation for the legislative agenda for the Second Session of the 110th Congress is built on mission
statements, principles, core values, position statements and current policies of The Arc, UCP, AAIDD,
ANCOR, and AUCD and on input from volunteers, members, and professionals from across the country. We
have taken into consideration expected proposals from the White House and Congress, as well as the laws
that need reauthorization in the Second Session of the 110th Congress. We will also deal with unexpected
issues as they arise.
For the Second Session of the 110th Congress, we maintain three tiers of priorities for our programmatic
legislative goals. The tiers include critical goals, priority goals, and additional important goals. The rationale
for the tiered scheme is contained in the programmatic goals section of this document. The DPC will
address any and all of these goals as issues relating to them arise.
Monitoring Laws and Policies
The Arc, UCP, AAIDD, ANCOR, and AUCD closely follow how laws and policies are carried out so that our
constituency is appropriately served. This includes influencing any changes in regulations as well as how the
federal government implements, monitors, and enforces relevant federal programs.
I. FEDERAL FISCAL POLICY GOALS
Introduction
The Second Session of the 110th Congress is expected to consider tax reform proposals and decide whether
a number of tax cuts will become permanent or be rolled back. Certain tax policies can significantly limit the
nation’s ability to address the unmet needs of our constituency.
Reductions in entitlement spending threaten our constituents. Adverse administrative Medicaid policy
changes as well as changes at the state level could adversely affect our constituents. Since Medicaid
finances lifesaving health care and long term supports for most of our vulnerable constituency who receive
supports, their futures are inextricably linked to any shift in Medicaid policy – at either at the federal or state
level. The very lives of our constituents are at stake in these policy deliberations. Certain changes to our
Social Security system could have a devastating impact on beneficiaries and on human services funding.
Federal fiscal policy is critical to The Arc, United Cerebral Palsy, AAIDD, ANCOR, and AUCD, because state
funding is often based on the amount of federal money available. When federal funding for programs is cut,
state funding rarely increases to make up the difference, and services to our constituents will be reduced, if
not eliminated. Like most Americans, we support the need for a strong economy and agree with the
importance of strengthening national security. However, a truly strong and secure nation can only be
achieved if:
       Federal funding decisions and tax policy do not result in a federal budget that is crafted at the
        expense of people with disabilities;

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       Services, supports, and benefits critical to the well-being of people with disabilities and their families
        are protected, improved, and expanded; and
       When needed, the federal government leads or assists states in being fair and efficient in carrying
        out their responsibilities to people with disabilities and their families.
Budget, Entitlements, and Appropriations
The Arc, UCP, AAIDD, ANCOR, and AUCD promote cost-effectiveness when such efforts do no harm to our
constituents and allow them to live as independently as possible in the community.
Congress sets annual fiscal policy by:
  1. Adopting a budget resolution that sets annual revenue and spending limits. The budget resolution is
the blueprint for discretionary and entitlement spending;
 2. Adopting annual appropriations bills which set spending levels for the many discretionary programs;
and
  3. Enacting a reconciliation bill requiring relevant committees to revise tax policy and entitlement spending
(such as Medicaid, Medicare, Social Security, Supplemental Security Income, and Food Stamps) to comply
with the budget resolution.
The combination of these three major fiscal actions determines the actual funding for all disability benefits,
programs and services for the year.
The Second Session of the 110th Congress must:
       Address the significant unmet needs of people with disabilities and their families by increasing
        existing federal funding and expanding the federal government’s investment in people with
        disabilities to enable them to live and work as independently as possible in the community with
        appropriate flexible long term individual and family supports;
       Ensure that eligibility for services and benefits is not restricted and that the level of services and
        benefits for entitlement programs (such as Medicaid and Social Security) is not reduced or limited in
        order to achieve budget cuts; and
       Remove the Social Security Administration’s administrative budget from any budget cap
        requirements for the Departments of Labor, Health and Human Services, and Education.
Revenue Policy
The Second Session of the 110th Congress must:
       Address the unmet needs of people with disabilities and their families before making further tax cuts
        or reforming tax policy so that it negatively impacts low wage earners and other vulnerable people;
       Protect low income tax payers from paying higher taxes;
       Enable people with disabilities to be independent and productive;
       Protect and enhance, not erode, services and benefits for people with disabilities;
       Assure that tax policies represent a sound investment and will not jeopardize the long term stability
        of people with disabilities and their families;
       Protect the Social Security trust funds for use by future beneficiaries;
       Raise sufficient revenues to balance the annual budget and finance the federal government’s role in
        providing essential supports, services, and benefits for people with disabilities and their families;
       Roll back or repeal tax cuts and adjust other tax policies that create a deficit or put existing disability
        programs at risk;
       Avoid creating impediments to the states’ ability to raise sufficient revenue to meet human needs;
        and
       Assure the continuing ability of non-governmental entities to support people with disabilities and
        their families.

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II. PROGRAMMATIC GOALS
Introduction
The Arc, United Cerebral Palsy, AAIDD, ANCOR, and AUCD recognize the vital role that the federal
government plays in providing services, supports, and benefits for our constituents and in supporting
programs that help prevent the causes and mitigate the effects of mental and physical disabilities. Our
constituents have highly diverse needs based on their personal preferences and desires, the severity of their
disabilities, their ages, and their individual or family circumstances. Many people with disabilities will
continue to depend on the federal government for certain services, supports, and benefits throughout their
lives.
Federal spending for people with disabilities living in the community, most of whom live with their families, is
an investment that is proven to save taxpayer money by lessening the need for more costly long term
supports. Nonetheless, most federal programs that support our constituents and their families are grossly
under-funded, leaving hundreds of thousands underserved or continually waiting for services, and these
numbers are constantly growing.
There is also an explosive national crisis in the availability of appropriately qualified direct support workers,
due to factors such as low pay, inadequate benefits, limited career options, and intense competition among
employers for entry-level workers. This situation leads to high turnover among workers and severely limits
the ability of providers to maintain or expand their services and supports. Worse, this crisis puts the lives of
our constituents at risk. These problems also affect the availability of other professionals in the field.
American society continues to support tremendous mobility of all families within and between states. People
with disabilities who receive any level of supports from state systems are often unable to move to join family
in other states, for example, when their parents move for employment or retirement, or when their parents
die and they need to move nearer adult siblings. Research demonstrates that wage earners in many families
decline promotions, transfers, and overtime in order to care for their family member with a disability, thus
limiting that entire family’s income and future. It is time for the nation to develop mechanisms to ensure
portability of federally funded supports so that the money can truly follow the person.
The Arc, UCP, AAIDD, ANCOR, and AUCD recognize that the Congress drives the disability agenda and some
of our priority goals may not be dealt with in this Congress, and some of our other goals will be coming up in
this Congress. The DPC will respond as appropriate to all Congressional activity related to disability policy.
A. CRITICAL GOALS
The Arc, UCP, AAIDD, ANCOR, and AUCD acknowledge that many vital federal laws affect our constituency.
Some of these laws rise in importance due to pending Congressional attention and the critical role they play
in the lives of our constituents. Medicaid and Social Security provide vital supports to our constituents;
potential changes to either program, therefore, require significant attention to the possible impact on people
with disabilities. The Congress and the Administration may address Social Security and the Medicaid
program in 2008. The relationship between Medicaid and direct support workers requires very close policy
coordination. Availability of affordable, accessible housing remains a major issue for people with disabilities
in communities across the country. A free, appropriate education for students with disabilities remains the
lynchpin to a productive and independent adulthood. Family support, although severely underfunded, is
very cost effective and best reflects the type of care favored by our nation. Thus, the goals related to
Medicaid, Social Security/Income Maintenance, Direct Support Workers, Family Support, Education and
Housing constitute our highest priorities for the Second Session of the 110th Congress.
With appropriate supports, our constituents can be employed, become taxpayers, develop friendships, and
participate in community life. Such successes are very fragile for many, and it is vital that government
assures our constituents opportunities similar to those that are enjoyed by everyone. Only through
government supports can many people with intellectual, developmental and other disabilities have choices in
housemates, employment, transportation, and other essential aspects of community life that most citizens
take for granted.
Medicaid
Medicaid is the lifeline for most people with significant disabilities. The Medicaid program is overwhelmingly
the largest funding source of long term individual and family supports in the federal/state mental

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retardation/developmental disabilities system, and the primary source of health care payment for most of
our constituents. For the increasing number of individuals with disabilities living with aging parents,
Medicaid will be the solution to meet their needs. Actions on Medicaid by the federal government have
already placed undue pressure on the states. Many states have scaled back eligibility, frozen already
inadequate reimbursement rates, and reduced services, with devastating impact on people with disabilities,
their families, and their communities. Today, many of our constituents cannot get health and long term care
services. Further shifting responsibility for Medicaid to the states and increasing flexibility that allows states
to reduce eligibility and benefits is placing many of our constituents and our nation’s health, therapeutic, and
long-term care systems for vulnerable populations at enormous risk. Medicaid should evolve instead into a
national program. In order to accomplish true Medicaid reform, the Second Session of the 110th Congress
must:
       Maintain the individual entitlement to a full range of Medicaid health and long term supports and
        services for all eligible children and adults with disabilities;
       Oppose Medicaid deconstruction or any moves to provide states with flexibility that eliminates basic
        protections for eligible individuals with developmental disabilities or the imposition of entitlement
        caps, Medicaid block grants, per capita caps, allocations, allotments, or other mechanisms that cause
        reductions in eligibility, services, or protections for our constituents;
       Prohibit issuance or implementation of any regulations that limit or eliminate services;
       Change Medicaid law so that consumers and families can choose to exercise control over resources
        to better meet their individual needs;
       Address unmet needs in the community by removing the institutional bias for Medicaid long term
        services by amending the Medicaid formula for cost-sharing with the states to provide a greater
        fiscal incentive for supporting individuals in the community rather than in institutions;
       Decouple eligibility for the home and community based waiver from eligibility for institutional
        services;
       Establish an incentive program of increased Federal Medical Assistance Percentage (FMAP) for states
        that commit to eliminating the wage differential between workers in community services and
        workers in government-run Medicaid services by increasing the wages and benefits of the
        community workers;
       Improve Medicaid so that beneficiaries and families are not disadvantaged by moving from one state
        to another;
       Ensure that states set and update reimbursement rates annually so that they reflect the actual cost
        of providing Medicaid funded services and supports, particularly adequate wages and benefits for
        direct support workers;
       Amend the Medicaid state plan option for home and community services that was enacted under the
        Deficit Reduction Act to increase the income limit (to at least that allowed for institutional and waiver
        services); allow the full range of services available under the home and community based services
        waiver; and otherwise improve it for supporting people with disabilities;
       Enact a requirement that states provide community attendant services and supports;
       Prior to action by the Centers for Medicare and Medicaid Services (CMS) on any Medicaid waiver and
        state plan changes, require states to provide enhanced public notification, opportunity for comment,
        and reporting mechanisms;
       Ensure that Medicaid eligible children with disabilities continue to obtain health related services
        during the school day under the student’s Individualized Education Program and receive any
        necessary transportation to those services;
       Ensure that states increase, and annually update, reimbursement rates and fees for health
        practitioners and clinical specialists to reflect the cost of providing services;
       Halt proposed changes that would reduce Medicaid services by limiting states’ ability to tax health
        care providers;


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       Encourage state implementation of the option in state Medicaid plans for families of children with
        disabilities to buy into Medicaid if private health insurance is not available or does not meet their
        needs;
       Encourage full implementation by states of options to establish Medicaid buy-in programs for people
        with disabilities who work;
       Secure protections for dual (Medicaid and Medicare) eligibles with disabilities to ensure that they
        have timely and affordable access to all medically necessary medications under Medicare
        prescription drug plans;
       Create a public Independent Medicaid Task Force, as proposed by the Administration’s New Freedom
        Initiative, that includes our constituents and their representatives and the provider community to
        examine and analyze the Medicaid program and reform proposals prior to Congressional action;
       Require that Medicaid managed care programs provide primary and acute care based on individual
        needs and informed choices as determined by the individuals and their doctors and include
        appropriate consumer protections and enforceable quality standards;
       Reject the placement of Medicaid long term services and supports within a managed care system;
       Maintain the prohibition against the mandatory placement of children with disabilities into Medicaid
        managed care without an approved waiver;
       Protect the entitlement to the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT)
        program and support sanctions against states that fail to properly implement it;
       Protect the ability of families and individuals to establish trusts to benefit Medicaid eligible
        beneficiaries;
       Ensure effective quality assurance mechanisms, oversight, and enforcement of state governments’
        implementation of federally supported community services and supports and the intermediate care
        facilities program for people with ―mental retardation and related conditions‖ (ICF/MR), including the
        involvement of people with developmental disabilities and their families in statewide quality
        assurance systems;
       Restore the annual resident review and maintain the preadmission screening protections under the
        Preadmission Screening and Annual Resident Review (PASARR) program for people with intellectual
        disabilities (formerly referred to as mental retardation) living in nursing homes, so that they will
        have access to home and community services and supports when nursing home care is unnecessary
        or inappropriate;
       Require that CMS recognize consumers and consumer advocacy organizations as their primary
        ―customers;‖ and that CMS develop appropriate training and information materials that allow its
        customers to understand their rights and responsibilities under Medicaid;
       Require CMS to issue guidance to states that will result in expanded coverage of appropriate
        assistive technology for Medicaid beneficiaries;
       Provide oversight to assure that CMS does not eliminate case management services through
        administrative measures that undermine the ability of states to fund these services;
       Ensure Medicaid reimbursement for a 30-day emergency supply of medication in anticipation of
        potential disasters, epidemics, or other emergencies; and
       Ensure that Medicaid eligibility rules and processes do not place undue burdens on applicants and
        beneficiaries who do not have access to birth or citizenship documentation.
Direct Support Workers
A well-trained, adequately compensated direct support workforce is essential to providing the necessary
supports and services to our constituents, who constitute a very vulnerable population. The current
Medicaid reimbursement system has created a workforce crisis evidenced by low wages, a lack of health
insurance, high turnover, and a shortage of staff. This crisis presents a grave threat to the lives of our
constituents and their families. Medicaid is the primary source of funding for the programs employing these
workers. The Second Session of the 110th Congress must:

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       Ensure funding so that direct support staff are paid a living wage, including appropriate benefits, at
        the same level of pay and benefits that states provide for staff working in state-operated programs;
       Require that states develop and implement a plan to address all relevant components that drive the
        crisis, including low wages and reimbursement rates, high turnover, and proper training;
       Require any state and federal minimum wage increases be reflected in state reimbursement rates for
        services;
       Support authorizing legislation and continuing financial support to provide pre-service and in-service
        training and other relevant educational opportunities for direct support workers to meet the diverse
        needs of individuals with disabilities; and
       Authorize appropriations for the Department of Labor to initiate a study and implement programs
        aimed at the direct support labor market to increase the pool of available workers and improve
        recruitment, retention, training, and supervision of direct care workers to better serve individuals
        with disabilities.
Housing
Across the nation, people with mental and physical disabilities face a crisis in the availability of decent, safe,
affordable, and accessible housing. Over 700,000 people with developmental disabilities live with aging
parents (at least one of whom is over age 65). For people who use wheelchairs or other mobility devices,
finding housing with even basic accessibility features (e.g. an entrance with no steps) ranges from daunting
to impossible. While there are unique issues in urban, suburban, and rural areas, this difficulty is magnified
in rural areas where there is a scarcity of any rental housing and new units are rarely developed. For people
with disabilities whose resources are limited to Supplemental Security Income benefits, the affordability crisis
is even worse.
Therefore, the Second Session of the 110th Congress must increase the supply of affordable and accessible
housing options that are integrated in the community, including home ownership and rental housing, to
meet the growing unmet needs of people with disabilities and their families by:
       Significantly increasing funding for, and protecting the integrity of U.S. Department of Housing and
        Urban Development programs such as the Section 8 Housing Choice Voucher program, the Section
        811 Supportive Housing for Persons with Disabilities program, the HOME Investment Partnerships
        program, the Community Development Block Grant program and increase funding for U.S.
        Department of Agriculture housing programs as well as all other federal housing programs providing
        funding for people with disabilities;
       Enacting supplemental appropriations to address the emergency need for safe, affordable and
        accessible housing for individuals with disabilities still affected by the 2005 hurricanes;
       Opposing efforts to limit housing options, including efforts to weaken fair housing protections;
       Removing barriers that prevent people from renting or buying their own homes, through:
        – simplifying programs;
        – ensuring appropriate fair-market rents;
        – eliminating discrimination based on source of income (such as SSI);
        – permitting people to acquire assets;
        - providing funding to educate and train public housing authorities and service providers on the
          housing needs of people with disabilities;
        - ensuring that non-profit disability organizations can administer tenant-based rental assistance;
          and
        - ensuring fairness and equity.
       Reforming and restructuring the Section 811 Supportive Housing for Persons with Disabilities
        program using proven ―best practice‖ models to increase the number of units created, improve
        leveraging of other affordable housing funding streams, and develop a range of appropriately sized
        and integrated permanent housing opportunities;

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       Enacting legislation requiring newly constructed, federally assisted housing to incorporate visitability
        standards (elements that afford accessibility to at least a dwelling’s first floor);
       Creating a national housing trust fund with deeply targeted eligibility criteria to increase the
        availability of affordable and accessible housing for people with disabilities;
       Requiring that projects developed through the Low Income Housing Tax Credit apply design
        standards identical to those in Section 504 of the Rehabilitation Act;
       Providing oversight of the Department of Housing and Urban Development’s (HUD) responsibility to
        meet the housing needs of people with disabilities; and
       Providing oversight of HUD’s management of housing programs as they impact our constituents.
Family Support
There are approximately 7 million individuals with intellectual and developmental disabilities in the United
States. While over 75% live at home with family, most families receive little or no services and face long
waiting lists. Life-long caregiving for individuals with disabilities has long-term economic, health, and social
impacts on the well-being and quality of life of families. Families with relatives with developmental
disabilities are more likely to live in poverty than other families. Women, providing the bulk of informal
caregiving, often juggle informal caregiving and employment. Siblings play important roles across the
lifespan and frequently assume primary caregiving responsibilities when aging parents are no longer able.
Currently, there are over 711,000 aging caregivers (over 60 years of age) of adults with developmental
disabilities, a population rapidly growing and in great need of services and supports. The Second Session of
the 110th Congress must strengthen the ability of families to support their relatives with disabilities by:

       Significantly increasing funding and establishing a separate authorization level for the Family Support
        Program;
       Protecting and expanding services and circumstances covered by the Family and Medical Leave Act
        to support our constituents and their families;
       Fully funding the Lifespan Respite Care Act to help ensure the availability of respite care for families
        with members of all ages with disabilities;
       Restoring funding to the Child Care and Development Block Grant (CCDBG) to expand child care
        services and provide technical assistance to child care providers so that they are better able to meet
        the needs of children with disabilities;
       Improving and expanding adoption assistance and foster care programs to better address the
        multiple challenges facing children with disabilities and special needs and their adoptive or foster
        families;
       Addressing inequities in access to and funding for direct support caregiver services for all Medicaid-
        eligible developmental disability populations;
       Creating a registry, consistent with rights to privacy, to facilitate re-unification of individuals with
        disabilities who were somehow separated from their families;
       Expanding and increasing funding for the National Family Caregiver Support program to fully include
        older caregivers of adults with disabilities;
       Providing a caregiver tax credit to financially assist families with out-of-pocket costs for disability-
        related expenses; and
       Establishing a national technical assistance center on family support for individuals with intellectual
        and developmental disabilities.
Education
Children with disabilities, like their non-disabled peers, have a right to a free, appropriate public education.
The Individuals with Disabilities Education Act (IDEA) guarantees this right; yet this vital law has never been
fully implemented, enforced, or funded in its over 30-year history. Most children with intellectual disabilities
and developmental disabilities continue to remain segregated from their age appropriate peers in school.
Investing in a successful educational experience under IDEA is the major route for individuals with

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disabilities to become independent, productive, and contributing members of our community. The No Child
Left Behind Act (NCLB) is scheduled for reauthorization in this Congress. NCLB can play a vital role in
measuring the academic progress of students with disabilities. The Second Session of the 110th Congress
must:
       Fully fund all components of IDEA, Head Start; and relevant components of the Higher Education
        Act;
       Expand and improve in-service and pre-service personnel preparation under Part D of IDEA, NCLB
        and the Higher Education Act so that all special education teachers can meet the new ―highly
        qualified‖ standard and to develop programs to expand the pool of undergraduates majoring in
        special education;
       Amend IDEA to place the burden of proof on school systems under the due process provision;
       Amend IDEA to allow courts to award fees to expert witnesses who are not attorneys;
       Provide oversight to ensure that the major components of IDEA, such as LRE, due process,
        transition, and IEPs are properly and fully implemented;
       Amend the Higher Education Act to enhance post-secondary educational opportunities for students
        with disabilities, particularly students with intellectual and/or multiple impairments;
       Reauthorize the No Child Left Behind Act and assure appropriate assessments for all students with
        disabilities under the law;
       Ensure that initiatives such as charter schools, vouchers, and individual education savings accounts
        do not adversely affect public education; the access of students with disabilities, especially those
        categorized as having intellectual disabilities (formerly referred to as mental retardation and who
        have extremely low rates of inclusion), to inclusive educational settings; or the guarantee of a free,
        appropriate public education for all students with disabilities; and
       Require any federal funds used to construct and renovate schools enable such schools to become
        fully accessible.
Social Security/Income Maintenance
Social Security is not only a retirement program. It is an insurance program to protect against poverty in
retirement or as a result of disability or death of a family wage earner. More than one-third of all Social
Security checks go to non-retirees, including nearly seven million people with disabilities. These beneficiaries
include workers with disabilities and people with disabilities who are dependents and survivors of disabled
workers, retirees, and deceased workers. Many depend solely on their Social Security or Supplemental
Security Income benefits and related health coverage for their basic survival. Discussions about Social
Security reform, however, usually focus on retirement benefits and seldom address potential effects on
people with disabilities in the retirement, disability and survivors programs. We support efforts to ensure the
solvency of the Social Security Trust Funds over a 75-year time frame while preserving the program’s basic
structure and strengthening its insurance functions. We do not support efforts to create private accounts
out of the Social Security Trust Funds since the impact of the resulting benefit cuts or additional trillions of
dollars in deficits would be devastating for people with disabilities.
The Second Session of the 110th Congress must:
       Protect and expand the effectiveness of income support programs and their related health coverage
        programs in the Social Security Act, including the Old Age, Survivors, and Disability Insurance (Title
        II) programs, Supplemental Security Income (SSI) (Title XVI) program, Medicare (Title XVIII), and
        Medicaid (Title XIX);
       Reject any proposal to privatize or otherwise diminish Social Security trust funds or revenues
        dedicated to the trust funds;
       Support proposals to ensure the long-term solvency (over 75 years) of the Social Security Trust
        Funds through adjustments that spread the costs and are as minimal as possible;
       Reject any proposal that would further narrow the definition of disability and lead to the loss of
        critical supports and services for children and adults with significant disabilities;
                                              Page 13
   Maintain the insurance protections of the Title II programs for people with disabilities;
   Recognize that intellectual disabilities (formerly referred to as mental retardation), cerebral palsy and
    most other developmental disabilities are lifelong conditions. Therefore, maintain SSI and Title II as
    cash assistance programs that are relevant and viable for children and adults with these conditions;
   Ensure adequate benefit levels and protect buying power through appropriate cost of living
    adjustments;
   Increase the Substantial Gainful Activity (SGA) level to the level used for people who are blind;
   Substantially increase the resource limit for SSI to the level it would have been had it been indexed
    for inflation since inception. Annually index the SSI resource limit for inflation;
   Increase the SSI earned and unearned income exclusions to the level they would be had they been
    indexed for inflation since inception, and index for inflation annually thereafter;
   Extend continued Medicaid eligibility for SSI/Medicaid beneficiaries who earn their way into the Title
    II Disability Insurance program so that they may continue to have the supports necessary to work;
   Eliminate the 5-month waiting period for eligibility for Title II disability benefits and eliminate the
    additional 24-month waiting period for Medicare for Title II beneficiaries with disabilities;
   Monitor changes in the process for determining disability and ensure the protection of claimants’ due
    process rights, including the right to a full and fair administrative hearing by an independent
    decision-maker who provides impartial fact-finding and adjudication;
   Permanently extend the attorneys’ fees payment system to people in the SSI program;
   Require the Social Security Administration (SSA) to minimize overpayments by establishing an
    efficiently working, beneficiary-friendly, system for collection of earnings reports and adjustments of
    benefits payments. Require SSA to waive non-fraudulent overpayments when SSA has failed to
    notify the beneficiary within a reasonable time period;
   Improve requirements for ―disabled adult child‖ eligibility to eliminate work disincentives;
   Exempt Disabled Adult Child beneficiaries from the Family Maximum when they are not living in the
    household of the parent/spouse;
   Ensure that individuals who adopt special needs children are not affected by application of the family
    maximum with respect to those adopted children;
   Ensure that people who work in sheltered or other subsidized settings have FICA taxes paid on their
    behalf and receive appropriate work credits for Title II and Medicare eligibility;
   Eliminate marriage penalties in Social Security disability policy;
   Enact technical and substantive changes to the Ticket to Work and Work Incentives Improvement
    Act to ensure the Act operates as intended for our constituents;
   Enact an earnings offset work incentive for Title II beneficiaries that parallels work incentives for
    SSI;
   Allow on-going presumptive re-entitlement to Title II disability benefits for those who lose benefits
    due to work but continue to be disabled;
   Permanently extend eligibility for SSI to refugees and asylees who are disabled or elderly;
   Enact a program to allow SSI beneficiaries to maintain resources dedicated for housing purposes;
   Ensure that SSI beneficiaries can participate in appropriate Individual Development Accounts,
    retirement plans (such as 401(k) accounts), and other similar accounts without jeopardizing their
    eligibility for SSI;
   Permanently authorize the Social Security Administration’s authority to conduct demonstration
    programs, so long as beneficiaries are protected from any disadvantage as a result of participating in
    demonstration projects; and



                                           Page 14
       Exclude the AmeriCorps State and National and AmeriCorps National Civilian Community Corps
        program payments for purposes of determining SSI eligibility and benefit amounts.


B. PRIORITY GOALS
The legislative goals delineated below reflect major laws and programs that are expected to receive scrutiny
in the Second Session of the 110th Congress. These laws and programs also play key roles in the lives of
our constituents and their families. In particular, they provide the essential health care, employment, family,
transportation, and technology supports to make community living a reality for our constituents. Essential
civil rights protections, emergency preparedness, employment, health care and community supports are
addressed by these goals. Given their importance, and the expectation that they will be addressed in this
Congress, they are deemed priority goals (for convenience, they are listed alphabetically).
Americans with Disabilities Act Restoration
In passing the Americans with Disabilities Act (ADA) in 1990, the Congress intended for the law to stop
employers from making employment decisions based on disability. In reality, people with disabilities are still
being judged unfairly, and the employment rate of people with disabilities has not markedly improved.

Over the years, problematic court decisions have had the effect of denying the ADA’s protection to people
with disabilities that Congress clearly intended to cover, including individuals with conditions like intellectual
disabilities, epilepsy, diabetes and mental illness. Court decisions have created an untenable situation
whereby employers can say a person is ―too disabled‖ to do the job but not ―disabled enough‖ to be
protected by the law. The case is then thrown out of court and the individual is never given the chance to
prove he or she can do the job.

The Second Session of the 110th Congress should:
       Restore protections under the Americans with Disabilities Act (ADA) lost or weakened due to Court
        decisions by clarifying the ―definition of disability‖ as originally intended by Congress; and
       Reject attempts to weaken any of the provisions of the Americans with Disabilities Act such as
        proposed ADA notification legislation.
Civil Rights
Voting Rights Reform
The Help America Vote Act (HAVA) of 1992 required fully accessible polling places for people with disabilities
by January 1, 2006. This promise has not been fulfilled. According to voters who reported their experiences
in the 2006 elections, polling places and voting technology throughout the country remain inaccessible.
Additionally, state laws requiring voter identification and/or voting machines with ―paper trails‖ have created
inconsistency in voting technology and confusion among voters with disabilities. Deceptive, misleading and
intimidating practices on the part of some election officials and others have made it more difficult for many
individuals with disabilities to become properly registered and/or to vote.
The Second Session of the 110th Congress should:
       Conduct oversight (e.g. hearings, reports) to document the progress achieved in implementing the
        Help America Vote Act (HAVA) of 1992 addressing the right of people with disabilities to vote
        privately and independently in any election, to rectify continuing failures to meet the provisions of
        the law and to make recommendations for improvement;
       Pass legislation that will protect people with disabilities from deceptive, misleading and intimidating
        practices on the part of election officials and others; and
       Ensure that any new voting reform legislation provides equal and full access to voting systems and
        polling places for voters with disabilities.
Other Civil Rights
The Second Session of the 110th Congress should:



                                                Page 15
      Pass legislation that will protect individuals from discrimination based on genetic information in
       health insurance, health care, and employment;
      Pass legislation that will include disability in the federal definition of ―hate crime‖ and provide
       resources to states for the prosecution of hate crimes based on disability;
      Protect and promote stronger enforcement of existing civil rights laws for people with disabilities,
       particularly the Americans with Disabilities Act, Individuals with Disabilities Education Act (IDEA),
       Fair Housing Act, Civil Rights of Institutionalized Persons Act (CRIPA), Sections 503, 504 and 508 of
       the Rehabilitation Act, Help America Vote Act (HAVA), National Voter Registration Act (―motor
       voter‖), and Air Carrier Access Act;
      Increase funding for federal government entities that enforce disability rights laws, including the
       Equal Employment Opportunity Commission (EEOC), the Election Assistance Commission (EAC) and
       civil rights offices in the Departments of Justice, Health and Human Services, Housing and Urban
       Development, Labor, Education, Homeland Security and Transportation;
      Preserve and enhance all civil rights legislation that pertains to people with disabilities and their
       families;
      Pass new legislation to protect individuals from discrimination in areas such as victimization or
       criminalization based on disability, the use of genetic information to deny employment or health
       insurance, and the use of physical and chemical restraints and seclusion in all settings;
      Preserve and enhance all federal programs that support protection and advocacy services for people
       with disabilities;
      Preserve and enhance legislation and social programs that protect the rights of children and youth
       with disabilities, particularly those who are served by foster care systems;
      Enact protections, including sanctions, against abuse, neglect, and inappropriate use of physical and
       chemical restraints and seclusion in all settings;
      Ensure that legislation dealing with issues such as physician-assisted suicide, stem cell research and
       research utilizing human subjects includes protections against abuse and discrimination on the basis
       of disability;
      Take action to ensure that the United States is an active leader in promoting the human and civil
       rights of children and adults with disabilities in all parts of the world, specifically by ratifying the UN
       Convention on the Rights of Persons with Disabilities; and
      Create and fund a research and training effort focusing on international cooperation on disability.
Developmental Disabilities Act
The Second Session of the 110th Congress should:
      Reauthorize the Developmental Disabilities Assistance and Bill of Rights Act (DD Act);
      Fully fund programs authorized under the DD Act, including:
                    1. State Grant Programs (Councils on Developmental Disabilities);
                    2. Protection and Advocacy Systems;
                    3. University Centers for Excellence in Developmental Disabilities, Education, Research,
                       and Service;
                    4. Projects of National Significance;
      Reauthorize the Title III Program for Direct Support Workers to address the direct support workforce
       shortage and improve the recruitment, training, support, and retention of a qualified direct service
       professional workforce in each state;
      Ensure increased funding and a separate authorization level for the Family Support Program under
       the Act;
      Give states the option to provide traditional family supports systems change activities and/or service
       integration activities;
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       Protect and expand the authority of Protection and Advocacy Systems to investigate abuse, neglect,
        and deaths, and to pursue class action litigation on behalf of our constituents wherever they live;
       Increase the meaningful participation of people with disabilities and families in the advisory and/or
        governing bodies of state DD Act programs;
       Support federal funding for self-advocacy leadership activities directed by self-advocates with
        appropriate organizational and infrastructure supports; and
       Ensure that any expansion in coverage or activities in the reauthorization of the DD Act be
        accompanied with increased funding so as not to result in negative fiscal effects or program
        outcomes for the programs currently authorized under the Act.
Emergency Preparedness and Response
The hurricanes of 2005, public health and other natural and manmade disasters have demonstrated that
both preparedness and relief efforts have been critically inadequate with regard to people with disabilities.
People with disabilities still disproportionately represent those who remain uprooted and at risk in
communities around the country, as well as on the Gulf Coast. While significant legislative action to address
the situation of people with disabilities in emergency preparedness and relief efforts took place in the 109 th
Congress, much remains to be done. Further, the legislative progress that was achieved must be built upon.

The Second Session of the 110th Congress should build on the progress made in addressing the needs of the
disability community in emergency preparedness and response efforts by:
       Conducting oversight (e.g. hearings, reports) of existing laws to document the progress achieved in
        implementing legislation from the 109th Congress addressing the needs of people with disabilities in
        emergency preparedness and response efforts, to address continuing failures and challenges and to
        make recommendations for improvement;
       Passing additional legislation that will:
            o   Require fully accessible temporary and long-term relief housing of at least 10% of available
                or developed housing resources;
            o   Exclude institutionalization as a solution to housing needs for people with disabilities, except
                in a dire emergency and for an extremely short period of time;
            o   Provide specifically for disability-related service coordination;
            o   Provide specifically for mental health and substance abuse services related to disasters and
                emergencies;
            o   Provide for legal services offered by legal experts with special training in disability rights and
                other disability law;
            o   Provide for a well-coordinated network of regional disability coordinators to work with the
                disability coordinators at the federal level; and
            o   Provide that direct support professionals are considered ―essential personnel‖ in emergency
                preparedness plans and response;
       Assuring that all federal agencies, federally contracted entities and other relevant organizations are
        accountable for developing and participating in coordinated approaches to disaster and emergency
        preparedness that are efficient, non-duplicative and address the needs of people with disabilities;
        and
       Appropriating and targeting adequate resources throughout the U.S. to coordinate state and local
        efforts specifically to ensure the effective involvement of people with disabilities and their
        representatives in disaster and emergency preparedness efforts.
Employment, Training, and Wages
The Second Session of the 110th Congress should recognize that most of our constituents who are of
working age remain unemployed or under-employed. Thus, the Second Session of the 110th Congress
should help our constituents reach their full potential and become as independent as possible through
integrated employment by:



                                                Page 17
       Reauthorizing the Rehabilitation Act and the Workforce Investment Act (WIA), including
        strengthening the linkage between WIA and the Rehabilitation Act, preserving the integrity of the
        Rehabilitation Act, increasing the emphasis on employment by strengthening and expanding the
        supported employment program, improving transition policy, expanding work experience
        opportunities, removing barriers to participation by people with disabilities, and ensuring full due
        process protections;
       Increasing funding for the state vocational rehabilitation program significantly above the required
        Consumer Price Index (CPI) level and increasing funding for supported employment, projects with
        industry programs, and workforce development programs that help our constituents find and keep
        jobs and have more career choices;
       Assuring that people with intellectual disabilities, cerebral palsy, and other disabilities can access all
        relevant work programs, including business development opportunities;
       Assuring that federal employees with disabilities do not lose their federal employment status due to
        outsourcing;
       Expanding employment opportunities by establishing federal procurement preferences for employers
        who employ significant numbers of people with disabilities;
       Assuring that people currently earning sub-minimum wages in supported or sheltered employment
        have their federal and other benefits and supports protected if any wage and hour policy shift would
        result in the loss of employment, benefits, or supports;
       Conducting oversight on the Department of Labor’s monitoring of compliance under the Fair Labor
        Standards Act and other federal non-discrimination requirements;
       Supporting policies that expand work place flexibility;
       Modernizing the Javits-Wagner-O’Day (JWOD) Program to expand employment opportunities and
        ensure that people with significant disabilities remain a priority for participation in the program;
       Assuring that part-time, supported, or periodic employees are included in any proposal that expands
        or extends fringe benefit coverage; and
       Restoring the funding and requiring the Department of Labor’s Office of Disability Employment Policy
        to fulfill its role regarding policy, programs, and research to advance the employment of people with
        significant disabilities.
Health Care
Our organizations are firmly committed to universal access to high quality, affordable health care for all
Americans. We recognize the importance of comprehensive primary and specialty care for our constituents.
Community health supports for our constituents must address mental and physical health needs, as well as
issues unique to aging with a disability. These supports must be accessible, non-discriminatory,
comprehensive, coordinated, and affordable and be delivered by well trained, experienced, and culturally
competent providers.
To achieve these goals, the Second Session of the 110th Congress must:
       Protect existing health care entitlements such as Medicare and Medicaid;
       Ensure that our constituents have meaningful choice and control over their health care and enjoy
        strong consumer protections;
       Fund individual care coordination for individuals with disabilities who have complex and chronic
        health care needs;
       Provide funding for primary and secondary prevention and wellness programs for individuals with
        disabilities;
       Expand funding for training of all health care providers about the needs of people with disabilities;




                                               Page 18
       Support a full range of managed care reforms that meet the needs of children and adults with
        disabilities, including a broad definition of medical necessity, enforceable federal standards, and
        legal remedies;
       Reject initiatives that would further segment the insurance market or weaken existing state
        insurance mandates because such initiatives would increase the number of our constituents who are
        uninsured and undermine the goal of universal access to health care;
       Protect and expand the State Children’s Health Insurance Program (SCHIP) as a dedicated program
        for insuring currently uninsured children, and reject efforts to co-mingle SCHIP with any initiatives to
        cap the Medicaid program;
       Ensure that Medicare continues to serve people with disabilities, is responsive to the unique health
        care needs of our constituents, and expands access to health care and durable medical equipment
        for Medicare beneficiaries with disabilities;
       Enact legislation to phase-out Medicare’s two-year waiting period under which people with
        disabilities qualify for Medicare coverage 24 months after receipt of Social Security Disability
        Insurance (SSDI) benefits;
       Enact legislation to eliminate Medicare’s ―in the home‖ restriction for coverage of mobility devices
        (e.g., wheelchairs and scooters) for those with expected long-term needs;
       Ensure that cost-cutting measures allowed under Medicare and Medicaid do not harm beneficiaries
        with disabilities;
       Support efforts to ensure that people in public and private health plans have access to affordable
        prescription drugs;
       Include preventive and restorative dental coverage under all applicable federal health care
        programs;
       Enact legislation requiring health plans to cover treatment for mental illness on the same terms and
        conditions as all other medical diagnoses; and
       Enact legislation to require health plans to cover Pervasive Developmental Disorder and Alzheimer’s
        Disease on the same basis as they cover other neurological disorders.
Long Term Community Services and Supports for Individuals
The demand for long term supports is a critical issue in the 21st century. However, the nation lacks a
comprehensive, proactive national public-private system for delivering long term supports. The current
system is a patchwork of inadequate funding—with the largest source of federal funds provided by the
Medicaid program that requires most people to be impoverished to receive supports. With the first of the
―baby boomers‖ now retiring, the need for qualified support workers and family caregivers will exacerbate
severe inequities in the ability of individuals with significant disabilities of all ages to live in homes of their
own choice. In order to meet this national challenge, the federal government must take the lead in
developing a coordinated, comprehensive approach to long term supports and services.
To meet this challenge, the Second Session of the 110th Congress must:
       Expand, modernize, and, where appropriate, maintain national policies that provide individual
        supports. Such supports should encourage individual control of services, self-sufficiency, and
        personal responsibility among our constituents. Such services and supports must be:
                 - consumer controlled;
                 - inclusive of personal assistance services;
                 - designed and implemented to meet individual needs;
                 - widely accessible; and
                 - provided in homes in the community.
          Such a system should avoid the need for people to impoverish themselves to qualify for services;



                                                 Page 19
       Support legislation to create a national, long term supports insurance program that is premium-
        based and non-means-tested; that will cover most workers; and that will provide cash benefits to
        assist beneficiaries in avoiding the need to impoverish themselves to qualify for Medicaid; and
       Amend federal law to allow military survivor benefits to be paid to a trust established for an
        individual with disabilities, to allow for the long-term support of the individual.
Quality of Services
The federal government has an important role in quality assurance, particularly regarding health and safety
issues. Rather than divest more of this responsibility to states, the federal government should be fulfilling its
role in monitoring and enforcement of the quality of services to our constituents.
In order for this to happen, the Second Session of the 110th Congress must:
       Assure high quality services, supports, and access in all programs serving our constituents in which
        federal funds are used;
       Require federal agencies to include families, people with disabilities, service providers, and
        Developmental Disabilities Act programs in all aspects of development and assessment of quality;
       Require training and technical assistance to states in order to implement comprehensive systems of
        person-centered quality assurance;
       Assure that people with disabilities, through enforceable standards, have the option to hire or fire
        their own staff and have a voice in how the service system operates;
       Maintain, strengthen, and, where appropriate, modernize federal monitoring, oversight, and
        enforcement roles. This must include assessment of consumer outcomes and satisfaction to assure
        appropriate outcomes for beneficiaries, as well as upgrading and enhancing data collection and
        management information systems;
       Strengthen federal enforcement mechanisms to include criminal, civil, and/or financial sanctions for
        states, communities, and other entities that violate federal requirements;
       Assure a well trained, well compensated, and stable workforce to support people with disabilities and
        their families by enacting legislation and increasing financial support to provide pre-service and in-
        service training of professionals and other workers to meet the diverse needs of individuals with
        disabilities;
       Require CMS to develop and publish a comprehensive annual report to Congress on state-level
        consumer satisfaction and outcomes; and
       Require CMS to publish annual data on health and safety quality oversight of services, including
        ICF/MR and home and community based services programs.
Tax Policy
In enacting tax policy, the Second Session of the 110th Congress must:
       Reject repeal of or reform of the Estate Tax and other tax reform that helps only the most wealthy;
       Protect low-income taxpayers from paying higher taxes;
       Enable families of people with disabilities to stay intact, independent, and self-sufficient, and allow
        for tax-favored savings for long term support needs similar to educational savings plans;
       Incentivize the private sector to provide cost-effective supports for individuals with disabilities and
        their families;
       Permanently extend the Work Opportunity Tax Credit;
       Allow income tax deductions for charitable donations by non-itemizers;
       Reject any provisions that would likely serve as disincentives to charitable donations; and
       Allow a tax credit for individuals or their families who incur expense in meeting long term support
        needs.


                                               Page 20
Technology
The Assistive Technology Act of 2004 called for new approaches on the part of programs authorized under
the Act to assure that people with disabilities and their families are able to access the assistive technology
they need. Funding is key to making progress.
The Second Session of the 110th Congress, therefore, should
       Ensure that people with disabilities have access to affordable, useable technology to support and
        enhance their lives;
       Fully fund all of the provisions of the Assistive Technology Act of 2004;
            o    State Grant Programs – Provide sufficient appropriations to bring every state and territorial
                 program to at least the ―minimum allotment‖ level as defined in the 2004 reauthorization,
                 and for affected state programs, restore funding that has been lost in recent years. Protect
                 and preserve the effectiveness of the alternate financing programs;
            o    Protection and Advocacy – Provide sufficient appropriations to ensure viable Protection and
                 Advocacy for Assistive Technology services in each state and territory;
            o    National Technical Assistance – Provide sufficient funding to ensure quality technical
                 assistance to each state and territorial program; and
            o    Research and Development – Provide sufficient appropriations to support a meaningful level
                 of research and development of assistive technology devices and standards.
The Congress should also restore and enhance access to assistive technology by funding projects such as
the Technology Opportunities Program formerly in the Department of Commerce
Transportation
The Second Session of the 110th Congress should expand transportation opportunities for people with
disabilities by:
       Ensuring that programs funded by the Federal Transit Administration such as mass transit programs
        (including paratransit), Section 5310 program for the elderly and people with disabilities, Section
        5317 the New Freedom program, the United We Ride interagency initiative, and other critical
        programs receive the maximum funding authorized in the law; and
       Promoting policies that expand the availability of accessible taxis, buses and other transportation
        vehicles and systems, particularly for rural and underserved communities.


C. ADDITIONAL IMPORTANT GOALS
The following goals, listed alphabetically, represent vital policy elements of importance to the disability
community. Some of these goals may be addressed in the Second Session of the 110th Congress .
Criminal Justice
Statistics clearly indicate that more and more individuals with disabilities are ending up in penal institutions
and juvenile justice facilities. Many end up in such placements due to the lack of other alternate treatment
programs. Such individuals are frequently the victims of abuse and neglect. Too little is being done to
protect these individuals and prevent systemic mistreatment.
The Second Session of the 110th Congress should:
       Expand the authority and the funding for the Department of Justice to carry out criminal justice
        initiatives and activities that affect individuals with disabilities, including those unique to individuals
        with intellectual disabilities, cerebral palsy, and other related disabilities in the following areas:
            –    Training of all personnel in the criminal justice system about issues unique to our
                 constituents, including identification of a disability;
            –    Developing data and conducting research, including on victims of crime;
            –    Developing and disseminating models of best practices;

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            –   Providing appropriate crime victim assistance to people with disabilities;
            –   Preventing discrimination by the criminal justice system against victims, witnesses, and
                those accused of crimes on the basis of disability;
            –   Ensuring appropriate treatment of prisoners with intellectual disabilities or psychiatric
                diagnoses, and ensuring that penal and juvenile justice facilities are not used as ―dumping
                grounds‖ for such individuals;
            –   Ensuring that appropriate medical interventions, including pharmaceuticals, are available to
                individuals with disabilities, particularly those with behavioral disabilities, to ensure that they
                are not inappropriately relegated to the criminal justice system;
            –   Prosecuting individuals that commit, and entities that are party to, physical, psychological,
                or sexual abuse, mistreatment, or neglect of children or adults with disabilities; and
            –   Ensuring inexpensive and timely access by families, providers and states to Federal criminal
                background checks for anyone employed in the disability service system.
Data Collection
The Second Session of the 110th Congress should:
       Provide funding to improve and expand the collection and publication of population-based and other
        data regarding our constituents, and as appropriate, other disabilities, including:
            –   Federal health, income maintenance, educational, employment, housing, transportation,
                social, economic, and criminal justice demographics and statistics;
            –   Information on unmet needs of individuals with disabilities who are unserved or underserved
                including specific data on state waiting lists;
            –   Information on the incidence and prevalence of cerebral palsy, intellectual disabilities
                (formerly referred to as mental retardation), and developmental disabilities;
            –   Abuse, neglect, hate crimes, capital punishment, and other forms of victimization against
                people with intellectual disabilities (formerly referred to as mental retardation) cerebral palsy
                and, as appropriate, other disabilities; and
            –   Effective health promotion and primary, secondary, and tertiary disability prevention
                strategies.
            –   Identify individuals who are Medicaid eligible but not able to access services, and ascertain
                impact on families.
Foster Care and Adoption
At least one-third of the more than 500,000 children and youth in American foster care systems today have
disabilities. The very systems intended to protect children were not designed to identify, assess and manage
the needs of children with disabilities. Once in the foster care system, children with disabilities may face a
full range of systemic problems that prevent positive life experiences and often experience abuse and
neglect. Caseworkers lack the tools to identify and assess disabilities; foster parents lack even basic
information about the special needs of children placed in their homes and foster children with disabilities are
often considered ―unadoptable.‖

The Second Session of the 110th Congress should:

       Fully fund all programs designed to support and assist children and youth in foster care systems,
        including:


            o   Title IV-E Foster Care Program
            o   Title IV-E Adoption Assistance Program
            o   Title IV-B Child Welfare Services Program
            o   Title XX Social Services Block Grant Program

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            o   Child Care and Development Block Grant
            o   Child Abuse Prevention and Treatment Act (CAPTA)
            o   Head Start
            o   Medicaid services for foster children


       Pass legislation requiring the Departments of Health and Human Services and Education to
        collaborate to:
            o   Develop and establish a uniform national data tracking system, consistent throughout the
                states that identifies children and youth in foster care systems who have disabilities and to
                assess the quality of their lives as a result of the government-provided services and supports
                they receive;
            o   Establish a coordinated approach to information and training for foster families, child welfare
                workers and educators that will serve to enhance the supports provided and the quality of
                life for all involved;
            o   Establish planning protocols and services for youth with disabilities who are transitioning out
                of foster care due to their age; and
            o   Strengthen efforts to identify and support adoptive families for children and youth with
                disabilities in foster care systems.
Habilitation
The Second Session of the 110th Congress should ensure that our constituents have supports, services, and
training available to teach them to achieve self-determination and increase independence, productivity, and
full citizenship through greater mental, physical, and social development. The Congress should support the
continuation and expansion to all states of states’ current ability to provide habilitation services under the
Medicaid rehabilitation option.
Immigration and Naturalization
The Second Session of the 110th Congress should:
       Ensure that non-citizens with any type of disability have a fair opportunity to enter and reside legally
        in the United States and to become citizens, without unnecessary or discriminatory restrictions;
       Ensure that our constituents who are legal residents have access to essential supports and services,
        such as SSI, food stamps, and Medicaid; and
       Pursue appropriate waivers of immigration law to allow for the active recruitment of qualified
        immigrants in order to bolster the direct support and professional work force.
Liability Insurance Protections
The Second Session of the 110th Congress should:
       Ensure fair compensation to our constituents for the negligence of another person or a corporate
        entity, including health insurance and managed care plans, and nonprofit organizations; and
       Ensure that no entity can be absolved of liability because the individual affected has a disability.
Non-Profit Organizations
The voluntary and religious non-profit sector has provided, and must continue to provide, the overwhelming
majority of services and supports for our constituents. The nonprofit sector must also be allowed to
maintain its traditional role of advocacy.
The Second Session of the 110th Congress must:
       Assure the continuing ability of private sector non-profit organizations to serve and advocate for
        people with disabilities and their families;
       Assure fair eligibility for non-profit groups under any new charitable tax credit or deduction;


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      Assure that Federal procurement rules not discriminate against non-profits and that non-profits are
       afforded the same privileges and benefits as small and minority businesses;
      Support oversight activities that assure accountability by non-profits, while making certain that this
       does not place undue burdens on non-profits, does not duplicate existing requirements and is
       coordinated with state oversight efforts; and
      Oppose any provision that would limit the ability of nonprofit organizations to engage in voter
       registration and outreach activities.
Prevention
The Second Session of the 110th Congress should endeavor to increase the prevention of causes of
disabilities by:
      Increasing funding for the National Center on Birth Defects and Developmental Disabilities at the
       Centers for Disease Control and Prevention, the National Institutes of Health, the Environmental
       Protection Agency, and for other existing federal education and prevention initiatives, including but
       not limited to:
             --Autism spectrum disorders;
             --Cerebral palsy;
             --Developmental disabilities;
             --Environmental hazards;
             --Fetal alcohol spectrum disorders;
             --Food and drugs;
             --Intellectual disabilities (formerly referred to as mental retardation)
             --Lead poisoning prevention through detection and abatement;
             --Product safety;
             --Secondary disabilities;
             --Sexual exploitation and abuse;
             --Smoking; and
             --Transportation safety.
      Requiring public and private insurance payers to pay for medical foods that prevent disabilities such
       as Phenylketonuria (PKU);
      Ensuring full implementation of the mandated Medicaid Early and Periodic Screening, Diagnosis, and
       Treatment (EPSDT) program;
      Protecting and expanding the existing disability-related warnings on alcohol products;
      Enacting legislation to limit the advertising of alcohol products to at-risk populations; and
      Supporting legislation that will provide nationwide tracking for the prevalence of developmental
       disabilities and associated environmental causes.
Research
The Second Session of the 110th Congress should:
      Significantly expand federal funding of basic and applied research at the Centers for Disease Control
       and Prevention, the National Institutes of Health, the National Institute on Disability and
       Rehabilitation Research, and the Environmental Protection Agency designed to both improve the
       quality of life for our constituents and to prevent the causes and effects of intellectual disabilities
       (formerly referred to as mental retardation), cerebral palsy, and related disabilities;
      Assess the financial and social impact of the failure of government to address the unmet needs of
       our constituents;

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       Support training of existing and emerging scholars to conduct relevant research;
       Promote the prompt publication and dissemination of appropriate findings, written in commonly
        understood language;
       Support research that examines the effects of multiple chemical exposures on the developing
        nervous system;
       Require the National Institute on Disability and Rehabilitation Research to prioritize and fund field
        initiated and other research in the areas of physical disabilities and mental retardation that
        represents a mixture of methodological approaches, including qualitative research, policy analysis,
        survey research and experimental design;
       Promote the implementation of accurate and independent research findings that assist people with
        developmental and other disabilities to lead quality lives in the community; and
       Support research on disability and aging.
Social Services
The Second Session of the 110th Congress should recognize that social services programs are under funded
and that a wide variety of needs remain unmet. Title XX of the Social Security Act, the Social Services Block
Grant, provides states with flexible funding to provide many community based services to people with
disabilities and others targeted low income populations. The Congress should:

       Increase funding for Title XX to the fully authorized level of $2.8 billion ; and

       Ensure that people with disabilities who are served by Title XX social service programs are not
        harmed by new performance standards that do not address the unique needs of people with
        disabilities.
Temporary Assistance for Needy Families (TANF)
The Second Session of the 110th Congress should improve the TANF program by addressing the unique
needs of the nearly 50% of TANF recipients who have disabilities and their families. Desired provisions
include:
       Improving screening and assessment for disability;
       Securing appropriate supports and services, including vocational rehabilitation;
       Allowing a more expansive understanding of the care of a child or other family member with a
        disability to be counted as a work activity;
       Increasing state flexibility by giving states credit for their effort to provide rehabilitative and other
        services and supports over a longer period of time in order to assist more individuals with disabilities
        to return to work;
       Pre-sanction reviews to ensure that TANF recipients with disabilities are not improperly sanctioned
        for an inability to comply with TANF rules; and
       Affordable and accessible transportation and other supports necessary to obtain and retain
        employment.




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                         Disability Policy Collaboration
                           1660 L Street, NW, Suite 701
                           Washington, DC 20036-5602
                              Phone 202-783-2229
                                Fax: 202-783-8250

                          The Arc of the United States
                          1010 Wayne Avenue, Suite 650
                             Silver Spring, MD 20910
                               Phone 301-565-3842
                                 Fax: 301-565-3843
                              Web: www.thearc.org

                              United Cerebral Palsy
                            1660 L Street, NW, Suite 700
                            Washington, DC 20036-5602
                               Phone: 202-776-0406
                                Fax: 202-776-0414
                                Web: www.ucp.org

American Association on Intellectual and Developmental Disabilities (AAIDD)
                    444 North Capitol Street, NW, Suite 846
                         Washington, DC 20001-1512
                            Phone: 202-387-1968
                              Fax: 202-387-2193
                             Web: www.aaidd.org

     American Network of Community Options and Resources (ANCOR)
                        1101 King Street, Suite 380
                          Alexandria, VA 22314
                          Phone: 703-535-7850
                            Fax: 703-535-7860
                           Web: www.ancor.org

          Association of University Centers on Disabilities (AUCD)
                        1010 Wayne Avenue, Suite 920
                           Silver Spring, MD 20910
                            Phone: 301-588-8252
                              Fax: 301-588-2842
                             Web: www.aucd.org




 This document is also available on the Web sites of the participating organizations.




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